Brian and I watched Life of Pi tonight while I folded four loads of laundry. That movie was incredible...so much to think about, and unbelievable characters and imagery. I had to post my favorite dialogue:
Writer: So, you're a Christian, and a Muslim?
Adult Pi Patel: And a Hindu of course.
Writer: And a Jew, I suppose?
Adult Pi Patel: Well, I do teach a course on Kabbalah at the university. And why not? Faith is a house with many rooms.
Writer: But no room for doubt?
Adult Pi Patel: Oh plenty, on every floor. Doubt is useful, it keeps faith a living thing. After all, you cannot know the strength of your faith until it has been tested.
Saturday, September 7, 2013
Tuesday, September 3, 2013
Dare Not Linger
Until a few weeks ago, I had never heard of a HeLa cell and I had only vaguely heard of Henrietta Lacks. Really, I only knew enough to know that Henrietta Lacks was an African-American woman and that there was a book about her. Clearly I had missed the fanfare of Rebecca Skloot's bestseller, The Immortal Life of Henrietta Lacks, when it was first published in 2009.
This past week, while vacationing with my family, I read that book cover to cover, sometimes in suspense, sometimes in amazement, and a few times, with sheer, selfish terror.
In those pages that are now crinkled and covered with random notes, I learned about Henrietta Lacks -- how her great-grandfather was a white plantation owner and her great-grandmother, a slave. How she died from a horrifically aggressive form of cervical cancer back in 1951, when she was only 31 years old, not long after giving birth to her fifth child. I learned about Mrs. Lacks's family and some of what they have endured in the last half century. And I learned about a very dark part of our nation's history; terrible things that black people, the mentally disabled, and other vulnerable populations were forced to sacrifice in the name of science.
This past week, between trips to play mini-golf and jump on trampolines, and between diving for things that sunk to the bottom of the pool and playing Pictionary, I also learned about the precious cells that came from Mrs. Lacks's tumor.
Henrietta Lacks's cancer cells, taken by Johns Hopkins doctors for experimentation without her permission (though legally) back in February 1951, grow in cell culture in the most remarkable of ways -- where other cells die, these multiplied, and continue to multiply, by the millions, billions, trillions. Ms. Skloot explains one estimate of their quantity -- that if we could weigh all of the HeLa cells ever grown, the scale would show 50 million metric tons. It sounds kind of miraculous to me, and it may well be, even considering the scientific explanations of why these particular cells behave this way.
Most everyone who knows about HeLa cells appears to agree -- these cells have fueled the most significant scientific discoveries of the last six decades. Despite that they are cancer cells, HeLa cells apparently behave enough like healthy cells to allow scientists to test the effects of countless variables including HIV, space travel, exposure to nuclear energy, and chemicals for medicine or food. HeLa cells are still used in thousands of laboratories around the world.
In this post, however, I won't pretend to be a scientist and I won't recount much more of the story of Henrietta Lacks, her life or her death, her family, her doctors, or the intense bioethical, philosophical, and even economic controversy surrounding the use of her cells and their genome. The book, and recent news articles (including this one), do some of that.
I also won't write about what this book has meant to me professionally, even though I asked my mom to borrow her copy only because it was relevant to work I am doing in my job as a health care attorney. I could write a whole post on my colleagues and friends who introduced me to this book and about their undeniable care and concern for my well-being as I process it, but I won't do that either.
I won't even write about my opinions on the dark history that the book uncovered for me -- issues related to race, scientific development, truth, and justice.
Today, I will take on a single perspective and I will write about what this book means to me as a cancer patient.
First, a caveat. The last thing I ever want to do is infect anyone else with thoughts from my crazy mind. I've thought a lot about whether this post could inadvertently do that. It's kind of like when you hear a buzzing sound and you ask your friend, "Do you hear that buzzing sound?"
"Well, now I do, thanks," your friend replies sarcastically. Yeah, I don't want that to happen. If you don't hear the crazy, I don't want to point it out to you, but I definitely hear it, and in case you do too, maybe knowing that we're in it together will help both of us. Anyways, that's my fair warning.
About one year before I knew about Henrietta Lacks's immortal cancer cells, I knew about my own hopefully mortal cancer cells. I knew that they had formed a four-inch-in-diameter blanket of doom over my left breast (that was the ductal carcinoma in situ, or "DCIS") and that they had formed an invasive tumor beneath that blanket (the invasive ductal carcinoma, or "holy shit").
I also knew that the tumor carried with it the HER2 protein which, prior to the relatively new drug, Herceptin, would almost certainly have killed me, maybe even by now, for all I know. I was keenly aware of how much Dana-Farber, my doctors, and my family and friends were doing to save my life. I even knew that the chemotherapy drug, Taxotere, was key to my recovery, despite that it and I didn't exactly get along. But I had no idea that Henrietta Lacks deserved credit for saving my life, too.
Well, she does. Because on page 139, I learned that scientists used Henrietta Lacks's cells to test and develop chemotherapy drugs, including Taxol, which is in the same family of medication as Taxotere, my reluctant Ally. On page 142, I learned that HeLa cells played a significant role in creating "the first monoclonal antibodies, special proteins later used to create cancer therapies like Herceptin." And on page 234, Ms. Skloot explained that a young cancer researcher had used HeLa cells to develop the process known as fluorescence in situ hybridization ("FISH"). On August 18, 2012, I wrote about how the FISH process helped diagnose my cancer as HER2+.
Amazingly, all of that is only related to what I know about my own cancer treatment. I haven't even recounted the role that the HeLa cells played in fighting polio and hemorrhagic fever and countless other diseases from which I have been spared.
No doubt, on the most superficial and yet the deepest level, I owe Henrietta Lacks one gigantic Thank You. I wonder if she would have wanted that. If so, I wish I could have given it to her.
This week, as I read about cancer research, cell behavior, and the tragic death of a young mother, I couldn't help but have a queasy stomach sometimes. I knew I should have skipped the part about how aggressive Mrs. Lacks's cancer was -- about how when they performed an autopsy on her, they found tumors "like pearls" everywhere. (You hear that buzzing?) I'll never forget Chapter 5's title, "Blackness Be Spreadin All Inside," based on Mrs. Lacks's explanation to her cousins of what she felt in her body. But like the drivers who cause curiosity traffic at the scene of an accident, I couldn't turn away. Maybe it was because I'd been in my own accident, so I had a sick curiosity in somebody else's. Or maybe it was because I believe that Mrs. Lacks deserves me to read about her.
Last week was my favorite week of the year because all of my immediate family lived under the same roof. None of that was ruined by my reading this book. But of course, I've felt a lot of cancer since learning about HeLa cells -- ugly pearls in my head, my chest, my neck, and under my arm. I had a few nightmares that I was experiencing some of what Mrs. Lacks had experienced; that I needed to plan for my own demise but I didn't have enough time to do it.
I know that writing this is going to make some of the kindest people I know feel guilty; like they lead me into the darkness of those horrible thoughts. But they didn't. In fact, if they feel guilty, then I'll feel guilty about their guilt and then we're all in a hole. Truthfully, if I read this book prior to my diagnosis, I'm sure I would have felt tumors and had nightmares just the same. That's how my mind has always worked. Getting cancer just gave it a particularly narrow focus of things to worry about.
The good news is that nowadays, my queasiness and my craziness always subsides. Maybe that's thanks to my firmed-up hope muscles, my more experienced inner fighter, or simply, my Effexor. Or, at least last week, I can thank my brother, who distracted me every time I got up from reading in my outdoor chair with the fear of being thrown into the pool fully clothed.
Anyways, right now, I don't feel any tumors. At least, I don't think I do...but wait...is something buzzing?
Seriously, though, The Immortal Life of Henrietta Lacks showed me once again that I've come a long way since our last August vacation, when I cried after I inadvertently glanced at the Jimmy Fund Telethon on TV. Reading a book about cancer cells was, in a way, an enormous personal victory and I am sincerely grateful for it.
But that book did something even more for me. It gave me focus. Not focus on tumors or even on cancer, but focus on the importance of research. On the need to find a cure.
To best explain this new focus, I need to make a confession. Early on after my diagnosis, I would sometimes glance at the cover of a newspaper, maybe in a stack at a convenience store or on a countertop somewhere, and I'd hold my breath, praying that by some miracle, the headline would read something like, Cancer Cure Discovered. I wouldn't be disappointed when it didn't say that, mostly because I knew I was being ridiculous and because these thoughts were all so fleeting anyways. But I often found myself coming back to the very conscious hope that one day, there would be a cure to what I had first thought of as an inevitably fatal disease, for me and for anyone else with my "bad luck."
Then I learned about my treatment regimen and about Herceptin. I came to understand that modern medicine would give me overwhelmingly good odds, the hope for a long life, and the belief, albeit sometimes an unsteady one, that I am cured.
Now, I feel lucky beyond words to have gotten a kind of cancer that had been studied for decades and for which doctors can not only do something, but can bet that that something will actually work. I often feel completely spoiled that my story (knock on wood) appears to be such a successful one.
However, with any peak comes a valley and even from my awesome summer vacation, I remembered the valley that far too many patients and their families have been dragged through. These are people like Henrietta Lacks and Mary and Ashley and the families they left behind to grieve. These are babies, children, teenagers, and adults, inflicted with a disease or a version of a disease for which we do not yet have a cure. I won't lie -- sometimes I wonder why I get to live when they don't. Then I remember that "Why" is often the most difficult question in the world. How, on the other hand, is something over which I have a bit of control.
On the morning before my double mastectomy, I wrote a blog that I later came to despise (I despised only my own writing; obviously I still cherished Nelson Mandela's words). In fact, I even started to draft a post about how dumb my thoughts from that blog really were. I wondered to myself -- How could I have been so stupid as to think there would be one clear morning when I would wake up and declare triumphantly, I am cancer free! It's just not that simple. Cancer is a stealth invader.
Still, something brought me back to that blog today. I re-read Nelson Mandela's words:
I have walked that long road to freedom. I have tried not to falter; I have made missteps along the way. But I have discovered the secret that after climbing a great hill, one only finds that there are many more hills to climb. I have taken a moment here to rest, to steal a view of the glorious vista that surrounds me, to look back on the distance I have come. But I can rest only for a moment, for with freedom come responsibilities, and I dare not linger, for my long walk is not yet ended.
As far as I know, I have been blessed with a cure to my cancer. I know that with that freedom comes responsibilities. I don't really know what those responsibilities are just yet, or what I will choose them to be. But I know two things with great clarity, the second one thanks largely to the Henrietta Lacks book. First, I know that writing can help some of us cope, and second, that research can lead us all to cures. Yes, writing saves lives, but that's still metaphoric. Research does it for real.
I don't look at newspaper headlines like I used to a year ago, although I do believe, in part because of Henrietta Lacks and her cells, that we will find a cure to all types of cancer, and to cystic fibrosis, ALS, AIDS, Alzheimer's, and other deadly diseases. I know, however, that my belief, even if shared by them, can't comfort Mary's children or Ashley's parents in their time of grief. Which is precisely why we dare not linger. We have a long walk ahead.
This past week, while vacationing with my family, I read that book cover to cover, sometimes in suspense, sometimes in amazement, and a few times, with sheer, selfish terror.
In those pages that are now crinkled and covered with random notes, I learned about Henrietta Lacks -- how her great-grandfather was a white plantation owner and her great-grandmother, a slave. How she died from a horrifically aggressive form of cervical cancer back in 1951, when she was only 31 years old, not long after giving birth to her fifth child. I learned about Mrs. Lacks's family and some of what they have endured in the last half century. And I learned about a very dark part of our nation's history; terrible things that black people, the mentally disabled, and other vulnerable populations were forced to sacrifice in the name of science.
This past week, between trips to play mini-golf and jump on trampolines, and between diving for things that sunk to the bottom of the pool and playing Pictionary, I also learned about the precious cells that came from Mrs. Lacks's tumor.
Henrietta Lacks's cancer cells, taken by Johns Hopkins doctors for experimentation without her permission (though legally) back in February 1951, grow in cell culture in the most remarkable of ways -- where other cells die, these multiplied, and continue to multiply, by the millions, billions, trillions. Ms. Skloot explains one estimate of their quantity -- that if we could weigh all of the HeLa cells ever grown, the scale would show 50 million metric tons. It sounds kind of miraculous to me, and it may well be, even considering the scientific explanations of why these particular cells behave this way.
Most everyone who knows about HeLa cells appears to agree -- these cells have fueled the most significant scientific discoveries of the last six decades. Despite that they are cancer cells, HeLa cells apparently behave enough like healthy cells to allow scientists to test the effects of countless variables including HIV, space travel, exposure to nuclear energy, and chemicals for medicine or food. HeLa cells are still used in thousands of laboratories around the world.
In this post, however, I won't pretend to be a scientist and I won't recount much more of the story of Henrietta Lacks, her life or her death, her family, her doctors, or the intense bioethical, philosophical, and even economic controversy surrounding the use of her cells and their genome. The book, and recent news articles (including this one), do some of that.
I also won't write about what this book has meant to me professionally, even though I asked my mom to borrow her copy only because it was relevant to work I am doing in my job as a health care attorney. I could write a whole post on my colleagues and friends who introduced me to this book and about their undeniable care and concern for my well-being as I process it, but I won't do that either.
I won't even write about my opinions on the dark history that the book uncovered for me -- issues related to race, scientific development, truth, and justice.
Today, I will take on a single perspective and I will write about what this book means to me as a cancer patient.
First, a caveat. The last thing I ever want to do is infect anyone else with thoughts from my crazy mind. I've thought a lot about whether this post could inadvertently do that. It's kind of like when you hear a buzzing sound and you ask your friend, "Do you hear that buzzing sound?"
"Well, now I do, thanks," your friend replies sarcastically. Yeah, I don't want that to happen. If you don't hear the crazy, I don't want to point it out to you, but I definitely hear it, and in case you do too, maybe knowing that we're in it together will help both of us. Anyways, that's my fair warning.
* * *
About one year before I knew about Henrietta Lacks's immortal cancer cells, I knew about my own hopefully mortal cancer cells. I knew that they had formed a four-inch-in-diameter blanket of doom over my left breast (that was the ductal carcinoma in situ, or "DCIS") and that they had formed an invasive tumor beneath that blanket (the invasive ductal carcinoma, or "holy shit").
I also knew that the tumor carried with it the HER2 protein which, prior to the relatively new drug, Herceptin, would almost certainly have killed me, maybe even by now, for all I know. I was keenly aware of how much Dana-Farber, my doctors, and my family and friends were doing to save my life. I even knew that the chemotherapy drug, Taxotere, was key to my recovery, despite that it and I didn't exactly get along. But I had no idea that Henrietta Lacks deserved credit for saving my life, too.
Well, she does. Because on page 139, I learned that scientists used Henrietta Lacks's cells to test and develop chemotherapy drugs, including Taxol, which is in the same family of medication as Taxotere, my reluctant Ally. On page 142, I learned that HeLa cells played a significant role in creating "the first monoclonal antibodies, special proteins later used to create cancer therapies like Herceptin." And on page 234, Ms. Skloot explained that a young cancer researcher had used HeLa cells to develop the process known as fluorescence in situ hybridization ("FISH"). On August 18, 2012, I wrote about how the FISH process helped diagnose my cancer as HER2+.
Amazingly, all of that is only related to what I know about my own cancer treatment. I haven't even recounted the role that the HeLa cells played in fighting polio and hemorrhagic fever and countless other diseases from which I have been spared.
No doubt, on the most superficial and yet the deepest level, I owe Henrietta Lacks one gigantic Thank You. I wonder if she would have wanted that. If so, I wish I could have given it to her.
This week, as I read about cancer research, cell behavior, and the tragic death of a young mother, I couldn't help but have a queasy stomach sometimes. I knew I should have skipped the part about how aggressive Mrs. Lacks's cancer was -- about how when they performed an autopsy on her, they found tumors "like pearls" everywhere. (You hear that buzzing?) I'll never forget Chapter 5's title, "Blackness Be Spreadin All Inside," based on Mrs. Lacks's explanation to her cousins of what she felt in her body. But like the drivers who cause curiosity traffic at the scene of an accident, I couldn't turn away. Maybe it was because I'd been in my own accident, so I had a sick curiosity in somebody else's. Or maybe it was because I believe that Mrs. Lacks deserves me to read about her.
Last week was my favorite week of the year because all of my immediate family lived under the same roof. None of that was ruined by my reading this book. But of course, I've felt a lot of cancer since learning about HeLa cells -- ugly pearls in my head, my chest, my neck, and under my arm. I had a few nightmares that I was experiencing some of what Mrs. Lacks had experienced; that I needed to plan for my own demise but I didn't have enough time to do it.
I know that writing this is going to make some of the kindest people I know feel guilty; like they lead me into the darkness of those horrible thoughts. But they didn't. In fact, if they feel guilty, then I'll feel guilty about their guilt and then we're all in a hole. Truthfully, if I read this book prior to my diagnosis, I'm sure I would have felt tumors and had nightmares just the same. That's how my mind has always worked. Getting cancer just gave it a particularly narrow focus of things to worry about.
The good news is that nowadays, my queasiness and my craziness always subsides. Maybe that's thanks to my firmed-up hope muscles, my more experienced inner fighter, or simply, my Effexor. Or, at least last week, I can thank my brother, who distracted me every time I got up from reading in my outdoor chair with the fear of being thrown into the pool fully clothed.
Anyways, right now, I don't feel any tumors. At least, I don't think I do...but wait...is something buzzing?
Seriously, though, The Immortal Life of Henrietta Lacks showed me once again that I've come a long way since our last August vacation, when I cried after I inadvertently glanced at the Jimmy Fund Telethon on TV. Reading a book about cancer cells was, in a way, an enormous personal victory and I am sincerely grateful for it.
But that book did something even more for me. It gave me focus. Not focus on tumors or even on cancer, but focus on the importance of research. On the need to find a cure.
To best explain this new focus, I need to make a confession. Early on after my diagnosis, I would sometimes glance at the cover of a newspaper, maybe in a stack at a convenience store or on a countertop somewhere, and I'd hold my breath, praying that by some miracle, the headline would read something like, Cancer Cure Discovered. I wouldn't be disappointed when it didn't say that, mostly because I knew I was being ridiculous and because these thoughts were all so fleeting anyways. But I often found myself coming back to the very conscious hope that one day, there would be a cure to what I had first thought of as an inevitably fatal disease, for me and for anyone else with my "bad luck."
Then I learned about my treatment regimen and about Herceptin. I came to understand that modern medicine would give me overwhelmingly good odds, the hope for a long life, and the belief, albeit sometimes an unsteady one, that I am cured.
Now, I feel lucky beyond words to have gotten a kind of cancer that had been studied for decades and for which doctors can not only do something, but can bet that that something will actually work. I often feel completely spoiled that my story (knock on wood) appears to be such a successful one.
However, with any peak comes a valley and even from my awesome summer vacation, I remembered the valley that far too many patients and their families have been dragged through. These are people like Henrietta Lacks and Mary and Ashley and the families they left behind to grieve. These are babies, children, teenagers, and adults, inflicted with a disease or a version of a disease for which we do not yet have a cure. I won't lie -- sometimes I wonder why I get to live when they don't. Then I remember that "Why" is often the most difficult question in the world. How, on the other hand, is something over which I have a bit of control.
On the morning before my double mastectomy, I wrote a blog that I later came to despise (I despised only my own writing; obviously I still cherished Nelson Mandela's words). In fact, I even started to draft a post about how dumb my thoughts from that blog really were. I wondered to myself -- How could I have been so stupid as to think there would be one clear morning when I would wake up and declare triumphantly, I am cancer free! It's just not that simple. Cancer is a stealth invader.
Still, something brought me back to that blog today. I re-read Nelson Mandela's words:
I have walked that long road to freedom. I have tried not to falter; I have made missteps along the way. But I have discovered the secret that after climbing a great hill, one only finds that there are many more hills to climb. I have taken a moment here to rest, to steal a view of the glorious vista that surrounds me, to look back on the distance I have come. But I can rest only for a moment, for with freedom come responsibilities, and I dare not linger, for my long walk is not yet ended.
As far as I know, I have been blessed with a cure to my cancer. I know that with that freedom comes responsibilities. I don't really know what those responsibilities are just yet, or what I will choose them to be. But I know two things with great clarity, the second one thanks largely to the Henrietta Lacks book. First, I know that writing can help some of us cope, and second, that research can lead us all to cures. Yes, writing saves lives, but that's still metaphoric. Research does it for real.
I don't look at newspaper headlines like I used to a year ago, although I do believe, in part because of Henrietta Lacks and her cells, that we will find a cure to all types of cancer, and to cystic fibrosis, ALS, AIDS, Alzheimer's, and other deadly diseases. I know, however, that my belief, even if shared by them, can't comfort Mary's children or Ashley's parents in their time of grief. Which is precisely why we dare not linger. We have a long walk ahead.
This post is dedicated to everyone walking in this Sunday's Boston Marathon Jimmy Fund Walk. And to Kate and Andy, who continue to help me on my walk, even though they are far too humble to believe that.
Tuesday, August 27, 2013
Just One Thing...
In the fall of 2006, I decided that I would leave my teaching job to become a lawyer.
The summer associate position that I accepted began the week before Memorial Day so I realized early in the school year that I was going to need to leave my teaching post before school was out for the summer.
When Ropes gave me the choice to delay my start date one week, I took it, even though it was financially costly. I wanted to stay with my students as long as I possibly could and I wanted to ensure that they had a smooth transition to the teacher who would take my place for the rest of the year.
In brainstorming how this could all work best, I had the idea to invite a student teacher into our classroom. He or she could work with my students beginning in the early spring and by the time I had to depart in May, everyone would be comfortable and happy with one another. My department head and my principal were supportive of the plan and that spring, my student teacher arrived. I will call him, "Tony."
Tony was a fascinating character. He was genuinely kind and hardworking, modest and thoughtful, strong, yet desperately vulnerable. And like almost every first time teacher (including myself), Tony struggled as a student teacher in front of the classroom.
Getting up in front of a room full of teenagers isn't easy for anyone. But eventually, some people find their groove and some people don't. As much as it crushed me (and Tony) to admit it, Tony never did.
In the end, Tony's supervising professor thought it would be best if Tony left his student teaching position. It broke my heart, not because my plan was a total bust, but because Tony wanted to do something that he didn't necessarily have the instincts to do. Finally, I agreed with Tony's supervisor that things weren't working out.
After Tony received this news, he didn't come back into the classroom. But he did write my students a letter. I will never forget that letter.
To be honest, I don't remember exactly what it said, but I know that it was the first time that Tony was himself. He was honest and confident, and even funny, as he told my students why he wasn't going to be with them any longer. I'm not sure they saw it as freshmen in high school, but if they did, that letter would have taught them more than most month-long history units. I know it taught me lessons that I still think of to this day. I also know that if Tony ever found a way to bring the person who wrote that letter into the classroom, he would have become an awesome teacher.
Getting up in front of a room full of teenagers isn't easy for anyone. But eventually, some people find their groove and some people don't. As much as it crushed me (and Tony) to admit it, Tony never did.
In the end, Tony's supervising professor thought it would be best if Tony left his student teaching position. It broke my heart, not because my plan was a total bust, but because Tony wanted to do something that he didn't necessarily have the instincts to do. Finally, I agreed with Tony's supervisor that things weren't working out.
After Tony received this news, he didn't come back into the classroom. But he did write my students a letter. I will never forget that letter.
To be honest, I don't remember exactly what it said, but I know that it was the first time that Tony was himself. He was honest and confident, and even funny, as he told my students why he wasn't going to be with them any longer. I'm not sure they saw it as freshmen in high school, but if they did, that letter would have taught them more than most month-long history units. I know it taught me lessons that I still think of to this day. I also know that if Tony ever found a way to bring the person who wrote that letter into the classroom, he would have become an awesome teacher.
* * *
Looking back, I realize that I should have done many things so differently for Tony. Despite that I was a pretty good teacher for my students at that point, I was an atrocious teacher for him and while everyone was focused on Tony's failures, no one (including myself) was focused on mine.
I realize the root of my failures -- that pesky control problem (again). Giving up control in my classroom was so very difficult for me. When I sat in the back of the room and watched him teach a lesson that I had taught the period before, I wanted Tony to teach it just like I had. I itched to "fix" all of the "mistakes" that I felt he was making. Meanwhile, I was making a whole host of my own.
I realize the root of my failures -- that pesky control problem (again). Giving up control in my classroom was so very difficult for me. When I sat in the back of the room and watched him teach a lesson that I had taught the period before, I wanted Tony to teach it just like I had. I itched to "fix" all of the "mistakes" that I felt he was making. Meanwhile, I was making a whole host of my own.
In helping to train Tony to become a teacher, my strengths became my weaknesses. I so sincerely wanted to help Tony love teaching as much as I did. I wanted to tell him everything that I had learned in five years and I wanted him to be able to skip over all the time and effort it took me in learning those lessons. I wanted my students to continue on after I left just as they would have continued on if I was there. And I wanted Tony to be someone that he wasn't meant to be.
Don't get me wrong, I was very kind and fair and diplomatic to Tony. But still, I have regrets about how I treated him. Most of all, I regret that I tried to give him too much too fast and I didn't encourage him to find his own style at his own pace. Granted, I didn't want my students to have to sacrifice their own learning in order for him to get there, but, still, everyone needs to start somewhere.
Even though I don't necessarily think it would have worked out however I had behaved, I believe I could have made Tony's experience a better one if I had known then what I know now. But the crazy thing about experience is that we all need to get it in order to learn from it.
Don't get me wrong, I was very kind and fair and diplomatic to Tony. But still, I have regrets about how I treated him. Most of all, I regret that I tried to give him too much too fast and I didn't encourage him to find his own style at his own pace. Granted, I didn't want my students to have to sacrifice their own learning in order for him to get there, but, still, everyone needs to start somewhere.
Even though I don't necessarily think it would have worked out however I had behaved, I believe I could have made Tony's experience a better one if I had known then what I know now. But the crazy thing about experience is that we all need to get it in order to learn from it.
* * *
In the last few weeks, I have had two different women reach out to me to tell me that they were recently diagnosed with breast cancer. In talking to these women, I have found myself reflecting on my time with Tony.
While there is part of me that wants to sit down and tell these women 1,000 different things that I have learned over the past year, a more mature part of me knows that I can't and shouldn't do any such thing. These women are about to begin their own journey and while it may have similarities to mine, it will be different.
I realize now that these women, and many men and women who will, unfortunately, come after them, will have their own moments of darkness, their own reasons that they wind up in those caves, their own ways to get out of them. While I have come to better see and understand the walls of my own caves and my own routes out, I don't pretend to fully understand theirs.
I realize now that there will be things that bother these women that didn't bother me and obstacles that they coast through that I found to be daunting. No doubt, sharing our experiences will help them and help me, but I know now that no matter how much I wish I could spare them pain that I have felt, there is no shortcut around this formidable life experience. They will earn their victory just like I did.
So instead of 1,000 pieces of advice for the newly diagnosed, I have just one thing I really want them to know at this stage of their journey:
Because of the incredible advances in modern medicine, because of the angels that will swoop in to care for you, and most of all, because of the unbelievable strength you will find within yourself, you will win. You will beat this. And while your path to victory won't be just like mine, it will be your own. Which, I have no doubt, will make it all the sweeter.
Saturday, August 24, 2013
The Weight of Weight
I am a human being over eleven years old, and I live in the United States of America, which means that I think about my weight. I can’t help it (despite my little peach-colored pill), and after a year of starting posts about this topic and never finishing them, I’ve decided, it’s time.
As I’ve mentioned before, I have a general rule against sharing personal stories about weight, diets, or workout regimens. But like any good rule, I believe there are exceptions and I’m hoping that this entry is one of them.
Let’s start with numbers since numbers are easy and since they likely quell some curiosity. This morning, I weighed 147 pounds. About eleven months ago, I weighed 20 pounds less than that and when I delivered Teddy, I weighed 53 pounds more. We good so far?
OK, now for some background to those numbers.
As a senior in high school, I was deeply loyal to my schoolwork and the sports that I played. I had a family, a best friend, a boyfriend, and a life that I loved. I ate frosting out of the container when I made a cake, batches of mozzarella sticks with Brianne, and countless slices of Papa Gino's pizza at team dinners. And I didn't feel guilty about any of it. I knew who I was in my small New England suburb and I was proud of that person. When I left for college, I felt excited, eager, and blessed.
When I arrived at Bowdoin, I still felt the same way. I missed my family but I wasn’t ever really homesick. At the same time, something unexpected happened.
When the honeymoon of orientation was over, I started to feel lost; not lost so much in terms of what to do but lost in terms of how I valued myself while I was doing it.
In Canton, I had been an above-average basketball player, swimmer, and gymnast. At Bowdoin, I was way below average at the first two, and gymnastics didn’t even exist. In Canton, I wandered from class to class with the smartest kids in the school, but at Bowdoin, I was surrounded by students (like Brian) who were the valedictorian of their high school class and I definitely hadn't earned that top spot. All of the sudden, I felt average, really average, and despite that now, average sounds wonderful, at the time, I hated that feeling. It felt boring and empty; snobby and insecure; complex, and yet so very simple.
A very ironic thing added to my pain – before I left for college, I got my hair cut short, basically to the hairdo that I (unintentionally) have now. At the time I sat in my hairdresser’s chair in August 1998, I wanted something new and different, but as soon as I got to Bowdoin and realized that I was new and my haircut was different, I regretted that decision. To be honest, I didn’t regret it in any conscious way; I never stared in the mirror and thought to myself, I wish my hair were long again. But I just didn’t feel right with short hair and deep down, I hoped that when it grew back, I’d be confident and happy again.
In search of that confidence and that happiness that I had somehow lost, I started to exercise. A lot. No matter the time of day or the weather or how much my knees hurt, I ran, swam, cross country skied, or stepped up and down on the StairMaster. Today, that all sounds fun (except maybe the StairMaster part) but it wasn't fun at the time. It was absolutely exhausting -- both for my body and for my mind. Unfortunately, however, I had no idea how to get either of them to rest. My mind had become a calculator for calories consumed and calories burned and despite that it was constantly doing math, no one ever knew.
In all honesty, my obsession with my weight wasn't about what other people thought. In fact, it wasn't even really about the number on a scale, either, and I rarely, if ever, weighed myself. My anxiety was really about what I thought about how I looked, how I felt in a new place, what I could (or could not) control.
At the time, 15 years ago, I never stopped and wrote about myself in the way I do now. But I did sometimes write poetry and often, my poems were based on feelings that I understood from personal experience. Maybe they weren't precisely my own feelings, but they were close. This was one of those poems that I wrote way back then:
Naked body
that I dread
screaming voices
in my head
numbers, mirrors
haunting me
suffocating misery
Second, minutes,
hours pass
screaming voices
still harass
secret pain
and misery
every moment
haunting me
Naked body
that I hate
before the mirror
life can wait
while the voices
scream my name
secretly
I drown in shame
Days and months
and years go by
naked body
wonders why
in the dark,
the snow, the rain
forced to feel
the endless pain
As I’ve mentioned before, I have a general rule against sharing personal stories about weight, diets, or workout regimens. But like any good rule, I believe there are exceptions and I’m hoping that this entry is one of them.
* * *
OK, now for some background to those numbers.
As a senior in high school, I was deeply loyal to my schoolwork and the sports that I played. I had a family, a best friend, a boyfriend, and a life that I loved. I ate frosting out of the container when I made a cake, batches of mozzarella sticks with Brianne, and countless slices of Papa Gino's pizza at team dinners. And I didn't feel guilty about any of it. I knew who I was in my small New England suburb and I was proud of that person. When I left for college, I felt excited, eager, and blessed.
When I arrived at Bowdoin, I still felt the same way. I missed my family but I wasn’t ever really homesick. At the same time, something unexpected happened.
When the honeymoon of orientation was over, I started to feel lost; not lost so much in terms of what to do but lost in terms of how I valued myself while I was doing it.
In Canton, I had been an above-average basketball player, swimmer, and gymnast. At Bowdoin, I was way below average at the first two, and gymnastics didn’t even exist. In Canton, I wandered from class to class with the smartest kids in the school, but at Bowdoin, I was surrounded by students (like Brian) who were the valedictorian of their high school class and I definitely hadn't earned that top spot. All of the sudden, I felt average, really average, and despite that now, average sounds wonderful, at the time, I hated that feeling. It felt boring and empty; snobby and insecure; complex, and yet so very simple.
A very ironic thing added to my pain – before I left for college, I got my hair cut short, basically to the hairdo that I (unintentionally) have now. At the time I sat in my hairdresser’s chair in August 1998, I wanted something new and different, but as soon as I got to Bowdoin and realized that I was new and my haircut was different, I regretted that decision. To be honest, I didn’t regret it in any conscious way; I never stared in the mirror and thought to myself, I wish my hair were long again. But I just didn’t feel right with short hair and deep down, I hoped that when it grew back, I’d be confident and happy again.
In search of that confidence and that happiness that I had somehow lost, I started to exercise. A lot. No matter the time of day or the weather or how much my knees hurt, I ran, swam, cross country skied, or stepped up and down on the StairMaster. Today, that all sounds fun (except maybe the StairMaster part) but it wasn't fun at the time. It was absolutely exhausting -- both for my body and for my mind. Unfortunately, however, I had no idea how to get either of them to rest. My mind had become a calculator for calories consumed and calories burned and despite that it was constantly doing math, no one ever knew.
In all honesty, my obsession with my weight wasn't about what other people thought. In fact, it wasn't even really about the number on a scale, either, and I rarely, if ever, weighed myself. My anxiety was really about what I thought about how I looked, how I felt in a new place, what I could (or could not) control.
At the time, 15 years ago, I never stopped and wrote about myself in the way I do now. But I did sometimes write poetry and often, my poems were based on feelings that I understood from personal experience. Maybe they weren't precisely my own feelings, but they were close. This was one of those poems that I wrote way back then:
Naked body
that I dread
screaming voices
in my head
numbers, mirrors
haunting me
suffocating misery
Second, minutes,
hours pass
screaming voices
still harass
secret pain
and misery
every moment
haunting me
Naked body
that I hate
before the mirror
life can wait
while the voices
scream my name
secretly
I drown in shame
Days and months
and years go by
naked body
wonders why
in the dark,
the snow, the rain
forced to feel
the endless pain
Naked body
wants to rest
screaming voices
still detest
before the mirror
waist and thighs
excruciating
battle cries
Naked body
that I dread
screaming voices
want me dead
But now is when
I must decide
to quell the voices
deep inside
or else allow
the pain to win
to take my life
to make me thin.
wants to rest
screaming voices
still detest
before the mirror
waist and thighs
excruciating
battle cries
Naked body
that I dread
screaming voices
want me dead
But now is when
I must decide
to quell the voices
deep inside
or else allow
the pain to win
to take my life
to make me thin.
Looking back on this poem is similar to looking back on August 8th of last year – it's like watching a thunderstorm storm in the distance after it's passed...oddly enough, it looks sort of beautiful...maybe mostly because it's passed.
Gradually, for several reasons, I grew out of obsessing about my weight. It wasn't so much that I solved the problem directly, but rather, that I found things that took priority over it -- Brian, my teaching job, law school, my kids. Over the years, I found peace with something that had previously tortured me and I was proud of that.
If you’d have asked me on August 7, 2012 about my feelings on my weight, I would have told you that I was satisfied with it. But deep down, I'd have been pleased to lose 10 or 15 pounds...a few from those extra handles above my hips, a few more from my C-section pouch, some from the flabbiness under my arms, and a bit from my inner thighs. Then, I’d feel great.
It turns out that there's a really quick way for me to lose 10 pounds, or hell, to lose 20...a cancer diagnosis. Despite that I’m that rare person who can eat meals through a bout of the flu, on August 8, 2012, I lost my appetite and I lost it bad.
I was literally so nauseous with worry that the thought of most foods made me want to throw up. It didn’t help that most calls from the doctors with additional news on my diagnosis came around dinner time, and after those, sitting up straight felt like a chore, and scooping food into my mouth felt damn near impossible.
I didn’t notice the weight loss at first; it was the least of my worries. But soon, I became concerned. I weighed myself and saw that I had lost ten pounds. I thought the cancer had started to kill me.
So I started to change the food that I was able to eat. While that deadly tumor was still in me, I decided to eat only the healthiest foods and pray that they would do everything possible to stop a single cancer cell from escaping from my breast. My life became mustard instead of mayo and cauliflower instead of ice cream. It wasn’t painful, but rather, something that I could control amidst a storm of things that I couldn't.
Prior to my double mastectomy, I was generally frightened to exercise so I really didn't. Crazily (and with absolutely zero supporting science), I thought that exercise could propel a cancer cell from the invasive tumor and nothing was worth that.
It turns out, however, that even without exercise, eating healthy foods really does cause weight loss because I continued to drop; five, seven, ten more pounds. Despite that I had some control that I craved, I was terrified that I was withering away. Sadly, the madness of Hollywood helped me, as I distinctly remember telling myself, Angelina Jolie is alive and she's way thinner than me. But still, I knew that I was not built to look like Angelina Jolie or to look the way that I looked. I was supposed to be bigger than that, healthier than that.
At one point just before chemo, I met with a nutritionist at Dana-Farber. She was lovely and she gave me some useful information. But the most important thing that I took away from our meeting was that she would help me if eating continued to be such a challenge. There are ways we can get you to gain weight even if you’re having trouble eating, she told me. I felt some peace.
In the end, as my worry about dying from cancer (and the related nausea) receded, my appetite returned. I’d guess that today I weigh exactly what I weighed on August 8th of last year. And if you want to know what I think about my weight right now...what I really feel about it...I feel great.
I’m still human, still over eleven years old, and still living in the U.S.A., so obviously, I still think about my weight. But now, I think about it so, so much less. When I do, I have pretty healthy thoughts and I really, really appreciate them.
This change in me is not, however, all because of cancer (or because of writing). I had grown far away from the girl who wrote that poem long before cancer. Still, some tiny parts of her toxicity lingered in me. Maybe while the chemo worked on any cancer that remained in my system, it also wiped out any of that girl's toxic leftovers because I honestly don't feel it anymore. Here's what I do feel.
Gradually, for several reasons, I grew out of obsessing about my weight. It wasn't so much that I solved the problem directly, but rather, that I found things that took priority over it -- Brian, my teaching job, law school, my kids. Over the years, I found peace with something that had previously tortured me and I was proud of that.
If you’d have asked me on August 7, 2012 about my feelings on my weight, I would have told you that I was satisfied with it. But deep down, I'd have been pleased to lose 10 or 15 pounds...a few from those extra handles above my hips, a few more from my C-section pouch, some from the flabbiness under my arms, and a bit from my inner thighs. Then, I’d feel great.
It turns out that there's a really quick way for me to lose 10 pounds, or hell, to lose 20...a cancer diagnosis. Despite that I’m that rare person who can eat meals through a bout of the flu, on August 8, 2012, I lost my appetite and I lost it bad.
I was literally so nauseous with worry that the thought of most foods made me want to throw up. It didn’t help that most calls from the doctors with additional news on my diagnosis came around dinner time, and after those, sitting up straight felt like a chore, and scooping food into my mouth felt damn near impossible.
I didn’t notice the weight loss at first; it was the least of my worries. But soon, I became concerned. I weighed myself and saw that I had lost ten pounds. I thought the cancer had started to kill me.
So I started to change the food that I was able to eat. While that deadly tumor was still in me, I decided to eat only the healthiest foods and pray that they would do everything possible to stop a single cancer cell from escaping from my breast. My life became mustard instead of mayo and cauliflower instead of ice cream. It wasn’t painful, but rather, something that I could control amidst a storm of things that I couldn't.
Prior to my double mastectomy, I was generally frightened to exercise so I really didn't. Crazily (and with absolutely zero supporting science), I thought that exercise could propel a cancer cell from the invasive tumor and nothing was worth that.
It turns out, however, that even without exercise, eating healthy foods really does cause weight loss because I continued to drop; five, seven, ten more pounds. Despite that I had some control that I craved, I was terrified that I was withering away. Sadly, the madness of Hollywood helped me, as I distinctly remember telling myself, Angelina Jolie is alive and she's way thinner than me. But still, I knew that I was not built to look like Angelina Jolie or to look the way that I looked. I was supposed to be bigger than that, healthier than that.
At one point just before chemo, I met with a nutritionist at Dana-Farber. She was lovely and she gave me some useful information. But the most important thing that I took away from our meeting was that she would help me if eating continued to be such a challenge. There are ways we can get you to gain weight even if you’re having trouble eating, she told me. I felt some peace.
In the end, as my worry about dying from cancer (and the related nausea) receded, my appetite returned. I’d guess that today I weigh exactly what I weighed on August 8th of last year. And if you want to know what I think about my weight right now...what I really feel about it...I feel great.
* * *
I’m still human, still over eleven years old, and still living in the U.S.A., so obviously, I still think about my weight. But now, I think about it so, so much less. When I do, I have pretty healthy thoughts and I really, really appreciate them.
This change in me is not, however, all because of cancer (or because of writing). I had grown far away from the girl who wrote that poem long before cancer. Still, some tiny parts of her toxicity lingered in me. Maybe while the chemo worked on any cancer that remained in my system, it also wiped out any of that girl's toxic leftovers because I honestly don't feel it anymore. Here's what I do feel.
I feel like I have finally learned what my body is supposed to look like when it's in a healthy state. I'm supposed to have some extra handles above my hips, some flabbiness under my arms, and inner thighs that remain untoned. These aren't things I should fight against or wish away. They're how things are supposed to be, maybe not for Angelina Jolie or for Victoria's Secret models, but for me.
I recently read an article in the newspaper about some number of teenage (and even pre-teen) girls who are taking pictures of their inner thighs and sharing them through social media. The most desired photos are sent by one who is thin enough that her inner thighs don't touch when she stands with her legs together. It makes me sick to think that girls are doing this, worrying about this, trying to change something that's not supposed to be changed.
I also know that there's not much that someone can say to help a person who is battling weight issues. Yes, I think a good therapist could be key, but a family member, friend, or blogger is probably not going to make much of a lasting difference. The process of learning to value, care for, and protect the body we were given is a long and complicated one.
Nevertheless, I want to assert my wishes for my own kids. I hope that they enjoy frosting out of the container when they make a cake, batches of mozzarella sticks with their best friends, and countless slices of Papa Gino's pizza at their team dinners. I hope they learn, as soon as possible, what their body is supposed to look like when it's healthy and I hope that they never do anything to try to change that shape. I hope they exercise and generally eat well because it feels good and because it will make them stronger. I hope they look in the mirror and see a person they are proud of (but not too proud of), and that they don't just see hips, arms, or inner thighs.
Finally, I hope, so very deeply, that my kids know that I believe they are the most beautiful people in the world. Because I really do. Whatever their weight.
I recently read an article in the newspaper about some number of teenage (and even pre-teen) girls who are taking pictures of their inner thighs and sharing them through social media. The most desired photos are sent by one who is thin enough that her inner thighs don't touch when she stands with her legs together. It makes me sick to think that girls are doing this, worrying about this, trying to change something that's not supposed to be changed.
I also know that there's not much that someone can say to help a person who is battling weight issues. Yes, I think a good therapist could be key, but a family member, friend, or blogger is probably not going to make much of a lasting difference. The process of learning to value, care for, and protect the body we were given is a long and complicated one.
Nevertheless, I want to assert my wishes for my own kids. I hope that they enjoy frosting out of the container when they make a cake, batches of mozzarella sticks with their best friends, and countless slices of Papa Gino's pizza at their team dinners. I hope they learn, as soon as possible, what their body is supposed to look like when it's healthy and I hope that they never do anything to try to change that shape. I hope they exercise and generally eat well because it feels good and because it will make them stronger. I hope they look in the mirror and see a person they are proud of (but not too proud of), and that they don't just see hips, arms, or inner thighs.
Finally, I hope, so very deeply, that my kids know that I believe they are the most beautiful people in the world. Because I really do. Whatever their weight.
Tuesday, August 20, 2013
Good Words: Compliments
The greatest compliment that was ever paid me was when one asked me what I thought, and attended to my answer.
~Henry David Thoreau
To be continued...
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